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Table 2 a PAIN. Parent questionnaire. b Baseline parent questionnaire

From: Pain in Rett syndrome: a pilot study and a single case study on the assessment of pain and the construction of a suitable measuring scale

a

Today is:

1. When did it manifest? (date and time)

2. How long did it last?

3. What was the child doing before she was in pain and where was she?

4. Which behavior did your daughter manifest that made you realize she was sick?

5. According to your daughter, where was the pain (belly, teeth, head…)?

6. If you were to write on a scale from 1 (minimum pain) to 10 (maximum), how intense was it?

7. What did you do to ease the pain?

8. When you intervened, how long did the intervention last?

b

Date:

1.When did it manifest? (date and time)

2. How long did it last?

3. What was the child doing before the pain started and where was she?

4. What behavior did your daughter manifest to show you she was happy?

5. According to her what makes her feel good?

6. If you were to write on a scale from 1 (minimum pleasure) to 10 (maximum), how intense was it?